Just wrote a massive post but connection cut out…here is the summarised version!
And so I’m back on Pizotifen again. I came in armed with a ‘‘2009 MAV Review’’ all typed up for my neuro today as I hadnt seen her for a year and she decided, based on everything I would retry Pizotifen. I had great success with this med in the past, and its the only one that has brought me any signifcant relief. I gave Topamax a good 4 months trial. We did consider upping the dose, but I’ve been on 75mg before and it made things only worse. After 3 months of Pizotifen, we will throw in an SSRi to kick start things if there is no improvement on its own. After this I think it will be Nori.
I’m determined that 2010 will be the year that I get better management of this damned beast. It will be med trial central. Hopefully this time next year I can post a success story!
Good luck Luke. I trialled Pitzotifen for 8 months but unfortunately it didn’t help. Hope you have more success with it. I know it worked for you once before. Hopefully it will again.
Third time lucky! Let’s hope the same combo is a winner for you: Piz plus Cip.
Luke, what’s the worst you felt while travelling? Did you ever have a really bad head coupled with feeling really flat? I’m going to Thailand on Sunday, have a nasty cold brewing (throat feels pretty rough), achy as hell, been dizzy and really low. As I sit here now I can’t be bothered to go anywhere feeling like this. It feels like it’s all too hard. I’d say I’ll be using a ton of valium on this trip.
Cheers for the encouragement guys! Third time lucky!
Scott - Sorry to hear you are feeling flat and generally like a sack of shit. Yes, of course, I felt like crap most days of my trip…but seemed to have developed away of blocking it out when it doesn’t force me to bed. In Argentina I felt horrific everyday, banging headaches coupled with extreme dizziness to the point I had no desire to even move. It was a serious effort lugging a backpack around and trying to sound enthuiastic, but you have to make the most of life while living with this junk. You know the game all too well, just like me mate. Give MAV an inch psychologically and it will take you for a ride. Just try to calm yourself and get come composure. I’m sure once you are out there you will be fine. Ko Lanta is a great place to relax! You going with mates, family or lady?
Thanks Luke. I had the worst dizz attack today since Canada – possibly worse. It hit me after driving a car today. I’ve swallowed nearly 10 mg of valium today but not much change. I keep reading over past attacks and checking out the trajectory. This has to die out soon –– maybe not until Thailand. I’m meeting some mates there. I don’t want to be a stick in the mud but if I’m stuffed, I’m stuffed. I’ll just lie in a hammock all day and won’t move if that’s what it takes to see this thing out. Just unreal how relentless this thing is – year after year. It doesn’t care.
Oh I hear you Scott. I am still feeling so awful 9 days after my 3rd “attack” in a month. The third one was huge and I am just not recovering from it. I haven’t been able to drive yet and I’m feeling like my life is on hold. This has got to end! I’m so afraid that the last attack has done some damage and I’m back in 2002 waiting for my brain to compensate. I’ve been on an increased dose of Ami now for 7 days (25mg) and no improvement. My neuro said I could try Sandomigran with it if it doesn’t work but my appt with him is only on the 4th Jan and I don’t know if I can last that long. I’m going to go to my GP and see if she will prescribe it.
Anyway, didn’t mean to hijack this post - I could just feel your frustration and desperation as I’m feeling that way too.
Jen, I hear you loud and clear. It’s really freaky when things get this nasty again. It’s like it was on the healthboard back in 2003/4. Everything I’m doing right now seems to set me off. Living is a trigger! I’ll probably take some piz with me to Thailand just in case I feel like having another go. Even at this level of misery, I simply cannot bring myself to take Cipramil again. I hate that stuff.
I’m wishing hard for us both (and everyone else) to see an end to this garbage. What a nice Christmas present that would be.
Oh, that would be the best Christmas present ever.
I managed to get hold of my neurologist this afternoon and I have a bottle of Sandomigran in my cupboard now which I’m going to start tonight. I’ve always been so cautious with medication, but not now. I’m not going to wait days/weeks/months for higher doses of Ami to work. I need to beat this NOW. I had good results when I took the Sando in 2003 so I’m feeling so hopeful (and desperate) that it will work now.
I’m still reeling from the fact that I’m in the middle of this major setback. A month ago I honestly thought I had this condition in the bag. I was feeling 99% for 99% of the time and life was so good.
One quick question which you may be able to answer for me Scott…how long is it supposed to take for the Sando to work? I am not able to read a computer screen for more than a couple of minutes at a time without things getting horrible out of focus and jumping around so I don’t have the luxury of looking up all the ins and outs of Sando. I’ve forgotten from all those years ago.
I’m holding thumbs for you too Scott. It’s just not fair that this rubbish should affect a long planned holiday in Thailand!
It’s really something else that you can be whacked again after all this time of having great migraine control. I said this to Nance recently that even though control is there a “fat kid can jump in the pool” and you take it right in the face. Have a read of what Steve Rauch wrote about this in the sticky above. This is no doubt what has happened to you (and me).
I think there is no rule of thumb in terms of how long it will take for pizotifen to actually work. It will depend on you, whether it is still effective for your migraine, and the dose. Have a read of this study that was done in Melbourne. There were very good results with pizotifen, even in one person who had been dizzy for 10 years (only needed 0.5 mg daily).
Thanks for those links. I’ll have a read of them when I can look at the screen for more than 5 mins. I think computer screens are a trigger for me and given my current sensitivity I’m trying to stay clear! I have read the description of the fat kid jumping in the pool. It is an excellent analogy for how migraine works - I have already explained it to a few of my family members who are so concerned about me at the moment.
I thought I’d let you know that I have woken up this morning after taking my first dose of Sando feeling better! Coincidence or instant results? Who knows. I’m certainly not 99% - the best way I can describe it is a feeling of more “calmness” in my head. Over the past 10 days it has felt like my brain was on speed and finally it is feeling more rested. My eyes aren’t taking so much strain this morning trying to focus and I’m able to move around without feeling so disoriented. I still have this weird pulling sensation in my head and i’m rather groggy from the drugs, but progression in the right direction is all i need now to stay sane.
Thanks for your suppost Scott. I’m sending you dizzy-free vibes - and I’m not that far away in Melbourne so they should get to you!
Hi Luke – hope we haven’t hijacked this thread but figured you wouldn’t mind considering we’re talking about pizotifen.
Wondering if you both found the sedating effect from it wore off after a while? I recall trying it about 2 years ago for about 3 weeks. I had a strange feeling on it mixed with Cipramil and always felt dopey in the head a lot – sedated as you do on an antihistamine (pizotifen has antihistamine activity). I was already feeling ok on Cipramil and didn’t see any added benefit then. Wondering what it would be like again now.
Keep us posted Jen. Hope this first day of feeling slightly better is a sign that it’s already having an effect. Did you kick it off at 0.5 mg?
Hi Luke - yes ditto what Scott said about hijacking the post.
In 2003 I took Sando for about 4 months I think and then I fell pregnant so went off it. I remember tolerating it really well at the time and don’t have any memories of side-effects. I was on Ami back then too which I started some months before Sando. The Ami is what makes me groggy in the mornings but it doesn’t last. Within 20 mins of getting up i feel fine.
Yes, I’ve kicked off at 0.5mg. Wow, within 20 mins of taking it I was man (or woman!)-down!! It knocked me right out. I virtually staggered to bed. Felt ok this morning when I woke up. I did go to bed at 9:30pm so had had plenty of sleep.
i’ll keep you posted. I’m feeling SO relieved that I’ve had some improvement. It’s amazing how quickly this condition gets you down. I was starting to have terrible thoughts about feeling that way forever. I can’t imagine not being able to drive again. Life as i know it would end.
Oh, I just opened the first link you sent me Scott. John Waterston is my doctor!! Adam actually put me onto him way back when on the Dizzy Healthboard. I know the article well! Dr Waterston is at Cabrini Hospital in Melbourne.
Wow, so he’s your doc. Very cool. You’re obviously in very good hands. For one he acknowledges that this is a chronic condition and has seen a huge range of people who have had this anywhere from months to decades. Is pizotifen usually his first choice? I should fire off an email to him and ask him a few questions about all of this junk.
Well no, it doesn’t seem to be his first choice. Back in 2003 I was seeing another doc (one also recommended to me on the healthboards) and it was him who put me first on Ami and then on Sandomigran.
It was only later (July 2006 from memory) that I started seeing Dr Waterston. At the time I was pregnant with baby no. 2 so he told me to come back when I’d finished having babies and breastfeeding them (OK, too much information, I know :)). So it was in July 2008 that I went back to him able to start trialling medications. He started me on Nortriptyline which I only got results on when I hit 60mg. I stupidly took my time getting to 60mg so only got the best results after about 6 months. Another few months later the benefits of the Nort started to wane and he says he doesn’t see further results after 60mg so he asked me (!!) what I wanted to try next. It was then that I started the Ami because i’d had good results in 2003 and it was me that initiated the Sando yesterday. So I may be in good hands, but so far I’ve had to be quite proactive when it comes to what I take and how much - he is a man of few words!! One thing really great about him is that I can call him anytime and he always calls back the same day.
Oh I forgot that I also took a beta blocker (can’t remember the name of it?) for only 2 weeks after the Nort wore off but I had absolutely terrible nausea so I stopped it. So his first choice was Nort followed by the beta blocker. Go figure?
He has explained to me that with this sort of dizziness it really is just a case of trial and error until you hit a drug that works.
Oh I forgot that I also took a beta blocker (can’t remember the name of it?) for only 2 weeks after the Nort wore off but I had absolutely terrible nausea so I stopped it. So his first choice was Nort followed by the beta blocker. Go figure?
He has explained to me that with this sort of dizziness it really is just a case of trial and error until you hit a drug that works.
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Well it really is. No one seems to have a clue exactly why these meds sometimes work and why they sometimes doesn’t. I had dizziness controlled by amitriptyline but I hated how I felt while on it + unfortunately it gave me bad stomach-problems which never really resolved… after only a couple of weeks.
I haven’t been very keen to try any meds since (also been low-symptomatic), but guess I might not be able to avoid them much longer…
No one seems to have a clue exactly why these meds sometimes work and why they sometimes doesn’t.
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I’d say the reasoning here is that each person’s migraine results from a complex brain chemistry problem – in some it’s calcium channel problems, or serotonin, or dopamine, or noradrenalin, or a combination of two or more. Thus one drug targeting screwed up calcium channels (verapamil) will not be effective if the problem lies more with an abnormality in serotonin function.